Making datasets ‘discoverable’ is one of the most crucial boundaries that need to be overcome when talking about effective data sharing. New research on Enhancing Discoverability of Public Health and Epidemiology Research data was commissioned by the Wellcome Trust on behalf of the Public Health Research Data Forum. This Forum gets together major international funders that aim to increase the availability of health research data in ethical, efficient and equitable manner, while the research explores how research funders can ease the identification, access and usage of public health and epidemiological data for researchers and therefore accelerate the progress in public health. The research was undertaken by a team led by Dr Tito Castillo along with the support of a few universities, associations and companies. They have conducted a survey, in-depth interviews and analysis of the existing models for enhancing discoverability of data, key findings appeared.
The three possible models were proposed: i) a centralised portal model, ii) a data journal model and iii) a linked data model. It is thought that when combined those would highly improve and accelerate the availability of health research data in an ethical and efficient ways. Nonetheless, the centralised portal model was preferred by the research community and proposed as an initial priority.
As funders we are committed to maximising the value of the vast and rich data generated by the research we support. Making data discoverable is a key first step in enabling wider access and re-use of data, and one we are committed to working with our partners on the Public Health Research Data Forum to address.
To begin the process and stimulate discussions and debating around the challenge of data discoverability within the research community, the Public Health Research Data Forum partners held a workshop at the London School of Hygiene and Tropical Medicine on the 30 July.
Our researcher Tempest joined this workshop and shared some very interesting points that were raised there:
- data discovery is one piece of the puzzle, but there are many more, like data usability and the social changes that need to occur to support sharing
- funders need to explicitly set aside resources for managing and sharing data if they want it to happen
- we know that medical data is sensitive so instead of insisting on sharing data we should all agree to share metadata
- when you ask researchers when they would be willing to share their data most say in 2 years, or say depends on the publication, which shows that people are actually open to sharing, just not immediately
And many, many, others…
It is very good to see that actions have been taken and that data access, sharing and re-usage have been put on the top of the agenda.